Support for carers has a few holes in the system when it comes to needing emergency respite assistance I have found. Mother has been with me over twelve months now. It has had its pressures but we have coped. Mother was overdue for respite care, mainly because, in our area, it is difficult to get respite beds. There are not enough Residential Home beds for a start. I had been wondering what to do when I want to visit my family & grandchild in the USA. I will need four weeks respite cover while away at least.
In my area, the Residential Homes do not have beds set aside for respite; they use a bed that becomes vacant for respite until a long term client fills it. I don’t know if it comes down to economics, but the Residential Homes don’t get paid as much for respite as for long-term clients and I’m told will not book for over 7-10 days at a time. I have been told by the Homes that beds cannot be booked in advance. This makes it impossible to plan!
So what happens when an emergency calls the Carer away?
August last year my husband had a heart attack (NSTEMI) and fortunately my son & daughter-in-law with their young toddlers offered to stay in my home and look after Mother. This freed me to go with my husband at short notice, as he was flown to a larger regional hospital Cardiac Unit where he underwent Angiography and had a STENT inserted into a 90% occluded LAD (Coronary Artery). Luckily it went smoothly and we were flown home the day after the STENT. This meant I was only away two nights. My daughter-in-law found it tough coping with Mother and her toddlers (who have their own health issues). She said any longer would have been too much. I really appreciated her help and honesty regarding the pressure on her.
The second time my husband ended up in hospital was overnight only, so I coped with supporting him, Mother, and work. It is a fact that the age group that care for elderly parents are most likely to run into health issues, due to their stage of life.
Well life took a dramatic turn recently when I came home, after a half day seminar, to find my husband (who had gone to work earlier), home curled up on the bed not feeling or looking very well. He was taken to hospital, and after two nights, urgently transferred again to the larger regional hospital. I knew he was probably going to go and had to desperately work out what to do with mother who needed looking after. My husband needed my support!
Of course it had to be on a Friday when Mother’s case manager was on holiday and the funding agency was on answer phone, that I finally knew the plans medically for my husband. I had to make arrangements for Mother, if I was to support my husband, who by now was in unrelieved pain and I was told his heart rhythm had deteriorated. I was in a dilemma, spending all my time making phone-calls and trying to find a placement in a Residential Home for her, when I should have been focusing on spending time with my husband, who had even asked me if he was dying! I couldn’t be sure he wasn’t.
Then I had to deal with Mother throwing a tantrum about the change happening “and why can’t I stay here?” and “I don’t need looking after!” statements. I had to sit and quietly talk it through with mother, who had long forgotten the reasons she came to live with me in the beginning. It was sad, the grief in coming to terms with loss of independent life as it used to be. I felt for Mother’s personal situation. She doesn’t realise what time consuming effort it takes from her carer to enable her in life tasks. Mother has it good with me and loves her room, so objected to having to move out of her comfort zone.
I had naively thought that if there was an emergency, I would be backed up with support for Mother by the Govt agency (NASC as I had been told, when I first took on care for Mother, that assistance could be provided with 1-2 hours notice. I resented spending all my time trying to find assistance for Mother when my husband needed me there, and it was taking all my time.
What a dilemma. So as not to upset Mother further, I decided to get her bag packed and ready to go while she slept. My son and daughter-in-law came to the rescue again, saying they would cover the weekend, as it was an emergency, as long as I had arrangements made for the week. I made a list of what was needed for Mother and ticked it off as items were packed. This saved time and confusion with so much on my mind. I kept Mother’s case in my Study, locked, so Mother wouldn’t find it and move items around and misplace them. We had talked about taking only basics, as her favourite skirt had gone missing during her last Respite.
I desperately made contact with a colleague, who said she would try to make room for Mother at the Home she worked in, on Monday. That was my only hope for placement, so in a leap of faith I went with my husband to the Regional Hospital via the Hospital Transport Flight. We arrived in the same Acute Cardiac Unit as seven months previously when my husband received the STENT. Monday arrived and I spent most of it making phone-calls and arrangements for Mother’s placement in Respite care. A NASC worker found placement in a closed dementia wing, which was the only bed available. This posed problems because Mother has been assessed as Rest-Home level care.
First thing the next day, I spoke to the NASC manager, as my daughter-in-law had rang me in tears telling me that the room Mother had been assigned to smelt of a strong stench of urine! I was told by the Manager later that it had been cleaned and set aside to have the carpet replaced. The only reason the room was available! I tried to find an alternative placement, finding out there was another bed available in much nicer room at another dementia unit (in another home).
I attempted to acquire the nicer room for Mother, but the placement was refused as Mother had been assessed as Residential home level care not requiring the locked dementia level. (I.e. she was not a wanderer). To change this, “Mother had to have a psycho-geriatric assessment first” I was told. I did not think Mother needed changing to dementia level care just to have a reasonable standard of room to stay in.
I spoke to the NASC manager, in an attempt to have mother moved from her smelly room. She told me that it was my responsibility to find a bed for Mother, even in an emergency! Not theirs. I had not been informed of that when I took on the care of Mother and it was a shock to hear. NASC told me that because I had decided to take on the care of Mother, then other family members were expected to come forward and cover in emergencies. I informed her that it was my decision alone to take on the care of mother; otherwise she most certainly would have been in a Residential Home. The family had made it quite clear they would not be involved, reasoning that it was only because I was a Registered Nurse that I could do it. I was on my own! As I pondered this dilemma, realising that my experience is not uncommon to many of the other full time carers out here, I resolved to find an answer to this gap in services.
Meantime I was staying in the relatives’ accommodation which was a nurses’ home in the past. It has a construction site outside which my sixth story window overlooks. This hospital is the largest in NZ and is in a continual state of growth. The high rise crane towers over the hospital, with its slightly shorter mate beside it. Noise starts up early, just before 5am each day unloading deliveries ready for the day’s work. By 7am the site is in full swing with the loud clanking and banging associated with the mechanics of such monsters. I watched the wide boom swing toward my building and hoped it doesn’t get too close. The Westpac Helicopter came and went frequently, bringing in emergencies. I note it’s the sixth or seventh time that day and I wonder if there has been a major accident somewhere. I felt out of touch with the world in this concrete institution.
My dilemma is not over yet as I find Mother’s week long stay was extended to two weeks due to Drs finding my husband had a 6.5cm wide dissecting abdominal aortic aneurysm, requiring surgery. This was very risky and he may die! The Clopidigrel to stop him rejecting his STENT had to be stopped due to increased risk of haemorrhage. If it is stopped too long he is in danger of a Stroke or clogging off his STENT, which is a type that takes longer to integrate and twelve months of Clopidigrel is recommended. It is a risky time. I try to keep his family informed, support my daughter-in-law with support of mother in the Home and spend time with my husband as he tries to cope with his situation and the possibility of dying. I am also on the phone alot regarding Mother in her sub-standard room. Between supporting my husband, walking the miles of corridor to meals, my room and get supplies etc, here is no time for much else.
I worry as my daughter-in-law informs me that mother’s room smells so bad, Mother has to keep the windows open when she is in it. I hear Mother had a psych-geriatric assessment today and that she can stay in the dementia unit as long as she is out in the residential part of the home during the day. Mother refuses to leave the unit, because she likes it there! (She recognised some of her old ‘club’ attendees and was glad to catch up with them).
Surgery is delayed another two days and I can’t help feeling down, as I wait around for my husband to have surgery before he splits his layers right through and begins haemorrhaging to death. The conflicting needs tug at me as I feel I am letting mother down in not protecting her.
It is interesting that the Government Dementia policy is to support looking after the clients at home as long as possible. I would have thought this included support for the unpaid Carers that save the Government costs of full-time Residential Home care, by caring for the loved ones at home. Mother's quality of life would have be reduced if she lived permanently in a Residential Home. I make decisions in her best interests as POA over Health and Welfare.
To live permanently in a Rest Home, Mother would;
· Lose most of her benefit, as it would go to the Home to pay her accommodation.
· She would have a small amount for toiletries etc $30.
· An annual clothing allowance of around $200pa.
· Mother spends $3-400 annually alone on subscriptions for her favourite magazines.
· She loves her clothes & ‘bling’ and spends around $5-600 on clothes when-ever she sees things she likes, sometimes twice a year!
· She would not qualify to go to her ‘Club’ anymore, therefore would spend all her time in the Home.
· Mother has medical issues that need careful monitoring and adjustment of medications regularly, which would slip as there is normally only one RN on duty for the whole residential complex.
· My experience with other carers and Respite care has been that the client deteriorates, due to lack of staff with appropriate qualifications and high work-loads.
· Mother would only be able to take furniture that would fit in her room, usually a chest of drawers, lazy-boy chair and TV if her room was big enough.
· She would be on a waiting list and get the room that becomes available. She does not have a lot of choice about location and size unless she can pay privately for a larger room (in a private wing) on top of the Govt subsidy. Mother does not have the finances to afford this.
· Family may visit her, but she wouldn’t see them daily as she does living with family.
· I wouldn’t have time to visit daily even.
It is sad that my sister and sister-in-law would prefer Mother to live permanently in a Home, even though it would mean all of the above. She loves her room in my house and the family environment of great-grand children visiting. Mother also told my sibling she ‘likes’ it in the home to reassure her that the respite time was ok in the circumstances. Mother lives very much in the present.
What a dilemma. Choose to carry on alone, knowing I have no support from Mother’s only other daughter, or put Mother in a Home, knowing that her quality of life would deteriorate and is definitely not in Mother’s best interests.
The extra stress and lack of support is not what mother, my husband or I need at this vulnerable time. It is times like these you find out who your friends / and caring ones really are. I just want Mother’s final years to be happy. I feel ’ve failed because the lack of support from some family members who put blocks in the way to justify staying away, affects Mother.
Normalizing the abnormal to justify deterioration in the elderly, choosing doing nothing instead of seeking treatment or Dr’s advice is wrong! Not respecting their (pre-disease) thought out decisions and written instructions re decision making over health and welfare is wrong! There I’ve said it. Bless you for reading this. Comments are welcome.
